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Old 11-18-2009, 02:04 PM   #1
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My parents are going into dementia and I'm trying not to panic

I moved in with my parents almost 3 years ago. Dad is 90, Mom will be 89 in Feb.

At first it was just helping them stay in their home and not have to move to an apartment, and I had lost my business and needed a roof over my head.

At the end of the first year there were several medical emergencies. Dad fell and broke 2 vertibrae in his neck, Mom had atrial fibrilation (sp) and also started passing out for a reason never determined by the doctors. I did some dectective work and self education and found out she was taking twice the recommended dose of Ambien by mistake. That was corrected 10 months ago, and no more episodes of passing out.

Now I think I'm dealing with some form of dementia. Your message boards have been really, really helpful. I see that what had seemed drastic and alarming to me is really pretty minor compared to what others are dealing with. Still, I feel like I need some help. Both of my parents are losing ground mentally and just don't see it. Well, in a way they do since they sometimes say to me that they aren't able to handle mental tasks that they used to be able to, but they don't mean it. At least they're not willing to let go of the responsibilities they can no longer perform, and when I try to tell them that they are making poor judgement calls they don't believe me.

My main concerns are driving, finances and medications.

I had my mother evaluated for mental functioning by their family doctor because of her forgetfulness. She was able to answer 17 of the 30 questions on this common test that is used, the MM(something)(something). He started her on Aricept and recommended a driving evaluation. I also got him to recommend a driving evaluation for Dad. Dad passed, but Mom failed and things are moving toward her license being revoked. I talked to the driving evaluator and she felt Dad did really well, so I'm trying to accept that.

I've tried to step in and help with medications several times, and meet strong resistance from my father. My mother's willing, but gets all confused when she tries to show me what she takes and when she takes it. I noticed that she has her medicines in a certain order and when they get moved around while she's showing me then she totally looses her understanding of the system she's developed over the years. I'm afraid to try to change her system or introduce one of those pill organizers. Her ability to understand new things just isn't there. But then I'm also afraid I'll let things go on as they are until one or both of them are mis-medicating themselves.

Dad writes all the checks. Lately things have been coming back because the mailing address isn't showing in the window, or late notices come in even though he says he mailed the check and a record of it shows up in his check register. I think maybe he's writing the check in a way that makes it useless, but I don't know how to get him to let me double check before he mails a payment. Dad's certain that the mailbox he's been using is old and has a hole in it that the payments get lost in and has starting driving further to a post office that has newer mailboxes. Paying the bills and trying to balance the checkbook (it never balances) are the only activities he has left and he spends 3-4 hours a day at this. I can't understand how he spends that much time at it, but he does.

This spring my Dad decided he wanted one last new car and they traded in a very nice 4 year old Buick and used all but four thousand of their savings to pay the difference. They went from leather seats to cloth seats, and now my mother has decided she has to have leather seats and wants to trade again. Between the excess they carry in their checking account and the four thousand they have in a savings account they can't make up the ten thousand they've already lost in value on the new car they just bought, plus the five thousand more a car with leather seats will be, but my mother's sure they have enough money. She would have no comprehension if I tried to explain the facts to her. Dad is saying no right now just because he says no to almost everything, but since he loves new cars he may like the idea in a few weeks or months. They may decide to cash in one of the 3 CD's they have. It makes me consider having them declared mentally incompetent. I have a POA, but their lawyer tells me that doesn't give me the power to make those decisions unless I get guardianship

The name of my thread used the word panic. Actually the correct word would be confusion. When do I insist on taking over, how do I get them to allow that, and is it safe to allow things to go along as they are until they and/or I reach a point when nothing else but me taking over is an option?

 
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Old 11-18-2009, 02:11 PM   #2
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Re: My parents are going into dementia and I'm trying not to panic

oh boy and dont panic! there should be no driving at all. i cannot answer your questions because everything with your folks will eventually get worse. i think its too hard for you to handle alone. can you get a caregiver or will they consider a nursing home. this is the hardest choice we have to make. my thoughts are with you. this board is the best support ever. someone will come up with good advice.

 
Old 11-19-2009, 09:00 AM   #3
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Re: My parents are going into dementia and I'm trying not to panic

Don't panic.... just hang with us. We have been there done that or we are going through exactly what you are. If nothing else we can all commiserate together!

Throw in the moving them to a care facility and you have picked out the hardest decisions and actions you have to make for your parents.

17 out of 30 is NOT a good score. Your Mom is well into her dementia. Mom was at a 24 out of 30 when she was diagnosed... and she was not able to do her medication, finances or drive effectively. Do you know what your Dad's score was?

The driving evaluation is such a great tool. We didn't have such when it was my turn and oh boy I wish we did. With Dad we just insisted on driving. We never physically took his keys or license but stopped his driving on doctor's recommendations. Somebody, even if it was Mom, would beat him to the drivers seat and he quickly got used to the joys of not driving. Until Mom's Alzheimer's set in. Then we found out she was letting him drive again. ARG! She was more difficult. Her family physician would just tell her to "focus more" when she drove. I am not sure what part of ALZ he didn't understand!! It was the Memory Assessment doctor that told her she could no longer drive. She went hysterical and that is when they ended up in Assisted Living with no vehicle. With none of us girls living close enough that was the only answer because she refused to stop driving no matter what arrangements we made. Some go easy like my Dad and some don't like my Mom.

Finances can be a real problem. Mom was doing much the same as your Dad. Being a bookkeeper all her life she knew she could pay simple bills. But over payments, nonpayments, non existent check registers, and Mom giving large sums of money to fly by night guys she met at a restaurant proved differently. She also bought a last car with cash, wrote a check, and never thought about the fact that she didn't have enough money in the checking account to cover it. She also spent needless money remodeling the house. There was so much money that just "disappeared". When Mom tried to give $250,000 to those fly by night guys and I stopped it she did give me a POA specific to her financial investments. I had a discussion with her financial adviser (Mom had been with the same small firm for years). He agreed that no money would leave without my permission. It has worked well to secure her investments. I just keep most of the money there. Mom also put my name on the checking account. Just in case something should happen to her and I needed it because we knew Dad couldn't do it. She had also done a POA for her and Dad "just in case". That's the kind of preparation everybody should do. We didn't make it specific to her memory problem. When they ended up in AL I just took over the bills by having them all sent to my house and all the legal instruments were in place. She never missed the bills. That was the part I feared the most and turned out to be the easiest because of the circumstances. So get your name on the checking account. Sign up for On-line access and you can see all the activity. Have a list of his bills and when they are due and you can keep up with what is going on. Volunteer to help him do the finances. Sit with him and watch what is going on making suggestions or fixing what you see without being argumentative. If he is like Mom he realizes that it is being difficult for him to do and will slowly relinquish since you are sitting there willing. "Dad, let me see if I can find that for you. You know how things hide when you look at them too much." "Oops these envelope things are so confusing. Let's turn that around so we can see the address." Use your creativity here Once your name is on the account, you can nab the bills before he sees them and pay them. I bet he won't miss the ones you do

Medication is a real danger point. Mom had her system and it ended up in several major problems (as you have already experienced with the Ambian) until the day that Dad ended up in the hospital because of a life threatening overdose of Xanax. Before that the pharmacist informed me several times that Mom was either refilling prescriptions too often or not often enough. Mom also confused hydrocodone for an antiviral. That was a mess!!! They do need a medication box. We put the pills for each day (by hour) in one of those weekly boxes for both of them and the rest of the medication was kept in a locked security box. If you are there it is easy to keep up with when they take what, you just have to take the first step and do it. They may balk at first but it won't be long before it is their new routine and you are in control.

No, they don't think anything is wrong with them and they think they can do whatever they have been doing even though you realize that they can't. That is part of the disease. Both of my parents are now in a locked facility and if you ask either one of them, there is nothing wrong with them. You just have to know that what you are doing is for their own good and gradually take over where needed.

Yes, Mom and Dad have both been so very angry with me for doing what I knew I had to do. I have been disowned, thrown out of the will, and they even called 911 and reported the van stolen. But it is better than the alternatives. I konw it's the disease that has confused their brain and makes those things come out of their mouth. I know they are frustrated by what they don't understand and what is happening to them that has to be scary. So I give them some slack, let the accusations roll off, and just do what needs to be done. It took a year to get it all accomplished and another year for them to get over their frustration and anger.... but it's been worth it.

To answer your question... the sooner the better is when you need to take over. Try to do it in a way that you appear to be helping not taking over at first. Use circumstances to your advantage and don't be above telling them what you have to in order to make it all happen. Be creative!

Keep typing. You ask so much so fast that it will take time to give you all the advice this board has to give. And keep asking your questions. It has taken me 3 years to get from exactly where you are to where I am now

Love, deb

 
Old 11-19-2009, 10:34 AM   #4
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Re: My parents are going into dementia and I'm trying not to panic

you have already gotten some real sound advice, I can only add about the med. part. my mom got so that she could not handle her meds so my dad took over and then it seemed that it was really hard to figure out when she took what so we went and got bubble packs. the pharmacies here will make up bubble packs , they are the greatest. they are done monthly and in each pack there is every day of the week and also breaks down in morning, lunch , evening whatever is needed and inside these bubbles are all the pills for a distrabution througout the day clearly marked morning, lunch, evening....each bubble containing all the pills needed for the right time of day. they make it easy to take all their meds and the proper amount and the right time of day.... I hope they can do something like this for your dad to help your mom.... welcome to our world of caregivers...

 
Old 11-19-2009, 02:59 PM   #5
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Re: My parents are going into dementia and I'm trying not to panic

Great idea Jags. Wish my pharmacist had the ability to do that when Mom and Dad were at home. Instead we just used the weekly reminder containers that had slots for morning, noon, supper, and evening. Whoever was there on the weekend refilled them for the next week before they left. Even at that there were occasionally medication problems.... and meds used as needed were OUT. The medication problem was only truly solved when they went into assisted living and a med tech gave them their meds.

If you are having problem determining which meds to give when you can go to your pharmacist. Hopefully your loved one is using only one pharmacist! They can give you a list of medications and when they should be taken. That list will be invaluable.

I had a list that included the pill name, what it looked like, any inscription on the pill, the dosage, and when it should be taken. It was updated with every med change. We posted that on the computer and home, mass e-mailed it to anybody that touched the meds, and everybody could get a copy immediately. That way there was no confusion about who took what. It takes a little work but you can get a handle on it with the help of your pharmacist. They can become one of your best friends.

Love, deb

 
Old 11-19-2009, 03:03 PM   #6
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Re: My parents are going into dementia and I'm trying not to panic

The antidote to panic is information. Consult your local Alzheimer Association. Go to a support group. Come here and ask and ask and read and read. YOU will be OK. We all did or are doing it ... we survive. It is scary, it is hard, but not impossible. Good luck and may God be with you.

Love,

Martha

 
Old 11-19-2009, 03:46 PM   #7
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Re: My parents are going into dementia and I'm trying not to panic

I thank each and everyone of you for your responses!

There is alot to take in here, so I just want to address a couple of points.

First, I know that a caregiver or nursing home would not be acceptable to them at this point, and even I don't think it's reached that point. I'm not even close to my limit yet. I think it's more fear of having to take on the caregiver role than it is about what is actually being required of me in the present moment. I do want to take on the responsibility and after having done that, then decide what I can handle myself and what I need to hire other people to do.

I really like the idea of the medication packets, and will check into that.

I was added to their checking account after Dad's broken neck and Mom's hospitalization for passing out. At the time it seemed wise in case one or both of them became physically unable to write checks. Now it's needed because they're becoming mentally unable to do so. I've also recently been added to their charge account because Mom hasn't felt well enough lately to do the shopping. She was put on Aricept in Sept. after the mental evaluation, and I think she's suffering side effects to that medication. I'm communicating this to her doctor and waiting for a reply.

Dad hasn't had a mental evaluation yet, says he won't take one, and wouldn't be willing to try Aricept if it was prescribed. I first I felt angry and frustrated at his attitude, but after seeing the leg weakness and fatigue Mom has experienced since taking Aricept, I'm not sure it would be something I want Dad to try. He's already so unsteady walking that any adverse effect in that area could be a disaster.

I also like the suggestion of helping him with bill paying, and really appreciated the approach that was suggested. If I can make it an activity that we share, I see the chance for a much smoother transition. It's not very often I can get to the mail before they do - it's one of the highlights of their day-and I can't image what Dad's reaction would be if he saw entries in his check book where I paid some of the bills. But a joint effort might be acceptable to him.

I guess it's pretty easy to tell that I feel intimidated by my parents, especially my Dad. Sometimes I feel it would be easier to stand up to them if they were living in my home instead of the other way around. Here, in their own home, they are used to being in charge - and I'm used to that also. Maybe the scariest part of this is the information I'm getting that someday, soon, I'll have to take a stand and accept their anger and disapproval. I am just so thankful that I was led to a place where I know I'm not the only one dealing with this, and that I don't have to do it alone. Even other family members who aren't experiencing this first hand, while being supportive, can't say "yes, I know what you're going through."

Bless you all.

 
Old 11-19-2009, 07:01 PM   #8
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Re: My parents are going into dementia and I'm trying not to panic

Yes, we are here Jojo... I know how you feel because I wandered on this board about 3 years ago feeling just the same as you. Scared and fearful. Daddy's little girl. Used to learning from him and looking up to him... not making decisions and taking care of him. It's scary. But so many of us have done it and we will be here to help you get through it as well. Yes there is a lot to take in but you have time.

I don't blame you for wanting to keep Mom and Dad at home as long as possible. I did. Just know when it's time to do something different. Never be afraid to reevaluate. What is good for today may not work tomorrow. It's on the job training for a job that is never the same two days in a row

You seem to have all of your financial needs in order. Helping Dad is not taking over. It's a smoother transition, and believe it or not, might end up being a highlight of your day. I loved doing things like that with mom and dad.

Yep there are side effects to the Aricept. Some do very well on it and some don't. Some benefit from it and some don't. I am not sure it did Mom any good at all because it was started so late and not sure it is doing any good for Dad because his is vascular dementia. Mom was taken off when her mini mental score dropped 8 points in less than a years. It was obvious that it was not benefiting her. I do think it contributed to her agitation.

I will say I have mixed feeling about aricept and namenda. They only slow the progress. They don't make it better or make it go away. If started very early and it can give you quality time with your loved ones then that's a good thing.... but by the time ALZ is usually diagnosed it's past the point that it will do the most good. Why would you want to stay any longer in a limbo of confusion? Seeing Mom's struggle through the mid stages of this disease... I am not sure I would want to take it. But I would want a diagnosis to know where I was going.... not for me but for those that love me.

Your Dad is dealing with your Mom's diagnosis. It's scary enough to know someone you have loved for so long is going through this. Then to know that you may be going there yourself is a double whammy. Give Dad time to adjust and try again. Even if you have to turn those sweet baby eyes at him and ask him to do it for you so you will know that he's ok I am not above bribery and eye batting to get what they need!!

Again... I understand that intimidation. I remember the day it hit me full force with my Dad. He was in the hospital with heart complications. He didn't understand why he was there, wanted to rip the IV out and go home. He pulled the father card on me and I shook for a moment. But realizing what was at stake I stiffened and stood up to him. He looked at me and said he was my father and I couldn't tell him what to do. I looked back at him and said... yes you are my father and that is why you have to do what I saw... because I love you and you know I would never do anything that would hurt you. Somehow that night we met half way. From that point on all I had to say to day was... You know I love you and you have to trust me. It was the trust thing that got us through a lot of difficult times. So right now develop that love/trust with your Dad. Help him, and be there for him, and let him know he can trust you to do what is best for him and your Mom...Help him with the bills and anything else he is having trouble with and he will know you are there and trustworthy. Start now and it will be easier later because the relationship with be bonded.

Love, deb

 
Old 11-20-2009, 10:15 AM   #9
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Re: My parents are going into dementia and I'm trying not to panic

JoJo,

At this time, you are no longer the child. You are the parent, of the Parents. And it sucks. There is nothing more difficult than being the adult in this relationship. It is extremely hard to be the one to say NO to our parents when they feel that they are right-as they have been with us all of our lives. But you, right now, and for the rest of their lives, are the adult that has to say NO to them. And most of the time it will stick in your throat and taste nasty when it comes out, but you are the responsible party here.

So take a deep breath, pull up your big girl pants and put on a calm face and learn how to work your parents. We have all had to do it. You learn how to bat your eyes and smile and pat their arms and hug their hands andl lead them through what needs to be done. You grow up the way that will help your parents the most.

So grab hold of the towel...we have the other end. You'll need it in the time to come. hold on tight cause some days you'll feel like it's the only thing that is keeping you sane.


lost momma 2 years ago 1 Nov.Lost Daddy 2 years ago 27 Sept.

 
Old 11-20-2009, 04:12 PM   #10
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Re: My parents are going into dementia and I'm trying not to panic

::::waving at Ibake:::: Good to hear from you with your wise advice!

Love, deb

 
Old 11-21-2009, 07:25 AM   #11
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Re: My parents are going into dementia and I'm trying not to panic

I had to smile at the image of pulling up my big girl pants, and I found it helpful to go back to that image often during the day.

Yesterday Dad came to me with a new replacement credit card he had just gotten in the mail and had tried to activate but couldn't handle the automatic activation process. This was the card he had lost last week, had me report stolen and order a new card, then decided he couldn't trust that company because his payment wasn't received the week before (a long, confusing story I won't even try to go into) and had me close the account, then found his stolen credit card in his sweater pocket, and understood he could no longer use it. But now he had forgotten that with the closed account the new cards were no longer good either. I had a really hard time convincing him that he couldn't activate and use the new cards, but thanks to all of you sharing with me and each other I was able to take a deep breath, pull up my big girl pants and patiently and repeatedly explain it to him until he could accept it.

I hope some day I will be able to give back what is being given to me.

 
Old 11-21-2009, 08:23 AM   #12
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Re: My parents are going into dementia and I'm trying not to panic

Bless you Jojo.... Your big girl pants fit so well!!

Yep, it's the forgetting that is so frustrating to both you and to him. If he forgets it's not like we forget. When reminded we remember or we have some spark that it happened. When they forget it is as if it never was. Just like us when we have no recollection at all... then it must not have happened. This is so hard to navigate around sometimes.

When Mom was much better than she is not I ask her to write things down. If somebody calls just write it down. If she pays a bill or cancels an account please write it down. I gave her a pretty journal to put all the entries in. She looked at me and said.... "I will write down the things I forget!" Needless to say there were never any entries because her forgetting is so complete that she doesn't even know she forgot!

One thing I have learned is that Mom and Dad feed off of my emotions. If I am anxious and uptight or frustrated then see that and respond accordingly. When I am patient and good humored... they follow suit as well. They may hot understand all that is said to them but they do pick up on the non verbal cues that you send their way

You did good Jojo...

Love, deb

 
Old 11-21-2009, 01:12 PM   #13
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Re: My parents are going into dementia and I'm trying not to panic

If you don't already have a power of attorney that includes EVERYTHING including medical, get one ASAP. You don't say if you have siblings but you might also consider what to do about the house title. We had our mother sign it over to us and we so relieved when the 36 month time limit passed! Now I believe it is 48 months or more for the medicaid "look back". But that's something the attorney can tell you.
Stay strong!

 
Old 11-21-2009, 04:34 PM   #14
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Re: My parents are going into dementia and I'm trying not to panic

Actually I think it's 5 years....

 
Old 11-21-2009, 05:21 PM   #15
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Re: My parents are going into dementia and I'm trying not to panic

Deb, I think you're right, when something like yesterday would begin I would get irritated, impatient and even frightened and my Dad would pick up on it and it would feed into his fear and frustration. The calm, patient approach seemed to work much better. I have to admit that before I started reading the posts on here I had very little understanding or compassion about what they were experiencing. This sounds terrible, but in a way I was mad at them for becoming so "stupid" sometimes.

I can't find my copy of the power of attorney, so I don't know if it's medical, financial, in fact I don't know much about the legal aspect. I know that when both parents are gone the ownership of the house will be shared by me and my sister. She lives in New Mexico and we live in Indiana, and she's the one who suggested I look for a support group on the internet. I'm not sure why, Titchou, you mentioned title to the house, or the medicaid "look back". What is this all about?

 
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